From inclusion to empowerment: advancing equity through co-research with people living with dementia

Too often, people living with dementia are spoken for rather than spoken with. This reflects deeply embedded assumptions/biases about people living with dementia in our society. This article explores the experiences and insights of individuals with dementia, positioning empowerment as a foundational...

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Main Authors: Lillian Hung, Joey Wong, Karen Lok Yi Wong, Emily Ong, Granville Johnson, Helen Rochford-Brennan, Jim Mann, Lester Gierach, Lynn Jackson, Mario Gregorio, Mary Beth Wighton, Phyllis Fehr
Format: Article
Language:English
Published: Frontiers Media S.A. 2025-05-01
Series:Frontiers in Dementia
Subjects:
Online Access:https://www.frontiersin.org/articles/10.3389/frdem.2025.1600162/full
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author Lillian Hung
Joey Wong
Karen Lok Yi Wong
Emily Ong
Granville Johnson
Helen Rochford-Brennan
Jim Mann
Lester Gierach
Lynn Jackson
Mario Gregorio
Mary Beth Wighton
Mary Beth Wighton
Phyllis Fehr
author_facet Lillian Hung
Joey Wong
Karen Lok Yi Wong
Emily Ong
Granville Johnson
Helen Rochford-Brennan
Jim Mann
Lester Gierach
Lynn Jackson
Mario Gregorio
Mary Beth Wighton
Mary Beth Wighton
Phyllis Fehr
author_sort Lillian Hung
collection DOAJ
description Too often, people living with dementia are spoken for rather than spoken with. This reflects deeply embedded assumptions/biases about people living with dementia in our society. This article explores the experiences and insights of individuals with dementia, positioning empowerment as a foundational strategy to advance social citizenship and equity. We collaboratively on more than a decade of shared work in research and advocacy. Our collective analysis identifies three key dimensions essential for meaningful empowerment: (a) recognizing strengths and building capacities, (b) equitable leadership, and (c) supportive environments and learning together. Our findings demonstrate that intentional, respectful collaboration produces extensive social, political, and healthcare benefits, actively challenging inequities and fostering a deeper sense of belonging and contribution.
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publisher Frontiers Media S.A.
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series Frontiers in Dementia
spelling doaj-art-c17e33a705fa4e458851e5c6d4cd9bc52025-08-20T02:58:41ZengFrontiers Media S.A.Frontiers in Dementia2813-39192025-05-01410.3389/frdem.2025.16001621600162From inclusion to empowerment: advancing equity through co-research with people living with dementiaLillian Hung0Joey Wong1Karen Lok Yi Wong2Emily Ong3Granville Johnson4Helen Rochford-Brennan5Jim Mann6Lester Gierach7Lynn Jackson8Mario Gregorio9Mary Beth Wighton10Mary Beth Wighton11Phyllis Fehr12School of Nursing, University of British Columbia, Vancouver, BC, CanadaSchool of Nursing, University of British Columbia, Vancouver, BC, CanadaSchool of Social Work, University of British Columbia, Vancouver, BC, CanadaIDEA Lab, School of Nursing, University of British Columbia, Vancouver, BC, CanadaIDEA Lab, School of Nursing, University of British Columbia, Vancouver, BC, CanadaIDEA Lab, School of Nursing, University of British Columbia, Vancouver, BC, CanadaIDEA Lab, School of Nursing, University of British Columbia, Vancouver, BC, CanadaIDEA Lab, School of Nursing, University of British Columbia, Vancouver, BC, CanadaIDEA Lab, School of Nursing, University of British Columbia, Vancouver, BC, CanadaIDEA Lab, School of Nursing, University of British Columbia, Vancouver, BC, CanadaIDEA Lab, School of Nursing, University of British Columbia, Vancouver, BC, CanadaBehavioural Supports Ontario, North Bay, ON, CanadaIDEA Lab, School of Nursing, University of British Columbia, Vancouver, BC, CanadaToo often, people living with dementia are spoken for rather than spoken with. This reflects deeply embedded assumptions/biases about people living with dementia in our society. This article explores the experiences and insights of individuals with dementia, positioning empowerment as a foundational strategy to advance social citizenship and equity. We collaboratively on more than a decade of shared work in research and advocacy. Our collective analysis identifies three key dimensions essential for meaningful empowerment: (a) recognizing strengths and building capacities, (b) equitable leadership, and (c) supportive environments and learning together. Our findings demonstrate that intentional, respectful collaboration produces extensive social, political, and healthcare benefits, actively challenging inequities and fostering a deeper sense of belonging and contribution.https://www.frontiersin.org/articles/10.3389/frdem.2025.1600162/fullempowermentPatient and Public Involvement (PPI)dementia researchpatient engagementhealth research
spellingShingle Lillian Hung
Joey Wong
Karen Lok Yi Wong
Emily Ong
Granville Johnson
Helen Rochford-Brennan
Jim Mann
Lester Gierach
Lynn Jackson
Mario Gregorio
Mary Beth Wighton
Mary Beth Wighton
Phyllis Fehr
From inclusion to empowerment: advancing equity through co-research with people living with dementia
Frontiers in Dementia
empowerment
Patient and Public Involvement (PPI)
dementia research
patient engagement
health research
title From inclusion to empowerment: advancing equity through co-research with people living with dementia
title_full From inclusion to empowerment: advancing equity through co-research with people living with dementia
title_fullStr From inclusion to empowerment: advancing equity through co-research with people living with dementia
title_full_unstemmed From inclusion to empowerment: advancing equity through co-research with people living with dementia
title_short From inclusion to empowerment: advancing equity through co-research with people living with dementia
title_sort from inclusion to empowerment advancing equity through co research with people living with dementia
topic empowerment
Patient and Public Involvement (PPI)
dementia research
patient engagement
health research
url https://www.frontiersin.org/articles/10.3389/frdem.2025.1600162/full
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